Why do we need SmartCareCF?
People with CF can spend weeks, and even months, of their lives staying in hospital and attending clinic. This is valuable time that they could otherwise be spent with their friends and families, working or pursuing their educations. Current models of care are, however, inadequate. A condition that requires people to stay separated also requires them to spend frequent periods in the same building at the same time. Furthermore, the number of people with CF in the UK continues to grow – at roughly the equivalent of an additional CF centre’s worth of people every year – but there isn’t the funding for new CF centres to meet this increasing demand.
This is where digital health monitoring comes in. It began with SmartCareCF, a feasibility study where participants (150 adults across seven CF centres) were asked to conduct daily monitoring of their health and collect a daily sputum sample. People with CF who took part in SmartCareCF used adapted weighing scales, hand-held spirometers, and a ‘wearable’ health monitor (similar to a Fitbit) to monitor similar things to what is measured at their regular clinic appointments. They also answered questions on how much they were coughing and generally how well they felt each day. Each person’s data was given a unique code and analysed anonymously. As well as the home monitoring data, the researchers also added information about whether or not a person had had an exacerbation into the analysis. This data was only fed back to the individual with CF and was not shared with their clinic.
A lot was learned from this initial study. The vast majority of people found the daily monitoring easy to use and completed the full six-month study. Adults with CF reported the value of seeing their own data and felt they had more control over their CF, and a number have continued to use the kit long after the study period ended. Of the people who stopped the study early, some found that remote monitoring generated anxiety which is completely understandable. At the Trust, we recognise that this approach will not suit everyone but believe in giving people options.
Early detection of an exacerbation
Currently, exacerbations are identified when people with CF let their teams know that they are feeling unwell. They might mention this in their usual clinic appointments, or phone up their team and ask for an emergency appointment if they feel their health has taken a turn for the worse. Only when they get to clinic can their team work out if they are experiencing an exacerbation, by performing lung function and other tests. But the sooner someone with CF and their CF team know they are having an exacerbation, the sooner they can do something about it.
Following completion of the SmartCareCF study, and with consent of the individuals involved, the complete anonymised data collected was analysed by developing new digital tools. The data that was collected in the study was “noisy”; there were so many different measurements taken from all the study participants that conventional analysis was impossible. However, using advanced computational machine learning approaches, the team were able to develop new digital tools that can now accurately predict an impending pulmonary exacerbation several days in advance of the individual or their CF team.
Home monitoring so far
The Adult SmartCareCF study has given us a better understanding of how home-based monitoring might help identify pulmonary exacerbations at an earlier stage. The next stage of this research is called Project Breathe and has just started at the Royal Papworth Hospital, with plans to expand to other CF centres.
For this study, researchers are developing and testing an improved version of the technology used in SmartCareCF, incorporating learnings from the original study. For Project Breathe, the individuals involved will continue to see their own data, as with SmartCareCF, but in this new study the individual will be able to share the data with a specialised CF research nurse at the CF centre.
The aim of Project Breathe is to explore whether remote monitoring can be used to identify pulmonary exacerbations in a more timely way, using the algorithm developed in SmartCareCF. Importantly, the study is also exploring whether someone who is stable and feeling well could safely avoid a routine appointment at their CF centre. This could avoid people with CF attending routine outpatient appointments just to be told that everything is okay, and reduce the risk of cross-infection from the hospital environment.
It is essential that these programmes are moving forward very carefully one step at a time, and because of this it may take a number of years for digital health monitoring to become part of standard CF care. We are funding the initial study at Papworth as a ‘testbed’ to develop a prototype which can then potentially be tested in other centres. We are learning at every step and the new data that is being collected all the time can be added to the machine learning to refine and strengthen the predictive algorithm. So, watch this space!
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